smartyjones

this may not be your issues but your post makes me think of it. . . one of the things that i remember dr. l saying at the OCD conference last year -- and please, this is my memory of what she said, so could certainly be off -- some of the kids have thoughts so bad and/or frightening that they will never reveal what they are. shortly after that, ds7 had what we now believe to be a severe herx-like reaction to an anti-viral resulting in severe contamination issues involving food. luckily, it was short term. through some insights as he was pulling out of it, i believe it was somehow wrapped up in that he or the person eating whatever would die from it (not too uncommon or unknown). however, i think added to that, was the belief that they would deserve such a fate b/c they did in fact, eat it. quite heart-wrenching to think of a 6 yr old having that thought -- about his family. what we saw, was wild tantrums often smacking 'contaminated' foods out of our hands or on the floor. i do honestly think, in his mind, it was wild, panicked attempts to protect us. again, maybe not your issues, but could what you see as denial, be denial of some thoughts so horrific to her that she simply can't come to terms with them? and, i'm so very sorry to say, that i agree with dcmom that finding a good therapist seems so very hard. perhaps an intensive center may have some answers. good luck!

i voted none of the above. . . both children have other infections we uncovered in additional to strep and elevated titers. ds7, possible prior exacerbation 3 mths prior for a few days time frame. sudden onset, then 100% remission with abx just like graph 1, but when off came off abx, baseline changes like graph 2, even with return to abx. ds9, onset more slowly, likely during 3-4 mths timeframe, severity likely only 1/2 chart, back to normal in about 6 mth time frame. no real potential prior exacerbation but some behavioral changes at age 6, 6-8 mths prior to brother's diagnosis; 2 years prior to his own; 2 years after treated strep infection, but of course, no follow-up to ensure was gone.

i think the term 'herx' is used to describe 'worse before better' and could have either cause but nothing is proven and all is theories. my understanding. . . prior to pandas, i had heard of it with yeast treatment when it is generallly used to describe the die-off of yeast and the toxins that produces. there, the presence of the toxins in the body are the problem. that's usually described as flu-like symptoms. in naturopathic circles, the term 'healing crisis' generally refers to the engagement of the immune system and the effects of that action. it's generally thought to be short-term intense rev-up of the immune system into a hyper state to deal with the troublesome agent. i think it could be any type of troublesome symptoms. i've always heard it to be not harmful but uncomfortable. however, in it's extreme, i guess it would be a 'cytokine storm' where the immune system overtakes the body. some believe many deaths of the 1918 flu pandemic were due to that action. for me, it all seems to go back to that same dang hamster wheel. . . what is causing the trouble - the presence of the pathogen, the overabundance of the pathogen, or the body's reaction to the pathogen? we are currently working with the theory that it's a combination of the three. if you never encountered the pathogen in the first place, you wouldn't have the trouble. you could have the pathogen in your body, but in a downgraded,non-troublesome form or amount; and for a particular individual, particular pathogens may engage an inappropriate troublesome reaction. so i see balance as the answer. . . of course, how to best achieve that is the million dollar question! pandas16, have you/are you experiencing some herx or are you just thinking about it? i believe my ds7 had a herx-like reaction to an anti-viral last year. it was an extreme, intense set of previous unseen OCD contamination involving food. it began slowly, a few days after beginning the med. became extreme in a week or so. then slowly faded away. my ds9, had what i believe is a bad reaction to a probiotic (again, thanks for your help,pandas16). it began a few weeks after that introduction, stayed around the same level and only abated with the deletion of that probiotic. at first, - and possiblly for about 6 weeks - we were thinking it was some type of herx, but it just went on too long. just from my personal experience, i tend to believe a herx should be short-lived and i tend to think it's the immune system rev up. however, i know others have other experiences with longer time frames. and possibly, that's due to a different reaction with a different cause but described by the same term - ???

i know it says "and interested public" -- anyone know how technical it will be -- although i do feel i've earned a PhD in pandasology in the past 2.5 years!! much thanks to those that had a hand in organizing! i'd really like to go -- could we do a response or something on this thread for those that do actually register?

hi frannie. glad to hear you are seeing such good success and i know it is so frustrating when there are backslides. we follow a bit of a different path - integrative MD and homeopathic remedies so i don't know the abx so well but wanted to share our story. my ds also had onset at age 4.5 also. he first tried a 5-day course of azith which was horrible for him. then did 30 days of kelfex and saw 100% remission in about 3 days. unfortunately, he relapsed after about 30 days off abx. he went back on and saw improvement but not so dramatic as before. our search led us to homeopathy and he was on some form of homeopathic treatment for strep. he was on pleosanum for about 9 mths - various ups and downs. whenever we tried to reduce, he backslide. when we switched to our current dr, we switched meds. after about 8 weeks, things were looking good and we tried to taper. no go. dr said we'd just keep him on that for a long time. we were also working to clear other infections as well. we kept him on that for another 6 mths - til Dec 2010. then we tried to taper again and he did well. 2 years and 2 months after onset; 23 mnths after first abx; 22 mths after first success with abx. it is a conundrum b/c you want to only use abx when necessary -- just figuring out that 'necessary' proves difficult. i remember too clearly kicking myself when he started to backslide. ds did have high titers that were falling but were still quite high. he only cultured positive the very first time, each after was neg -- even when we were sure he'd be positive. just my opinion, but i think that symptoms slide indicates infection. i'd say do what you can to counteract the neg effects of the abx but use them.

we're preparing ( or at least trying) for ds7 to go to a new school, 2nd grade. he had 'sudden onset' at age 4.5 in preschool with severe school phobia. kindergarten was touch and go, first semester very good. 2nd, the teacher raised the bar, he was falling short, she became frustrated. he never ate lunch at school, never used bathroom at school, i picked him up early (~1 hr) all year, no writing - and refusal to do activities that would result in writing, much non participating in group activities. we did homeschooling for 1st grade b/c trying to sell out house was MUCH longer than we had anticipated. now, i really don't know how he'll do. he is much healhier than he was last year. much of what i see as troublesome is in relationship with older sibling. i do catch many things - not so much behavioral but with the way ds thinks, esp with schoolwork, that aren't really troublesome but could be so in a school environment b/ci t is different from the norm. 2 yrs ago, ds was tested by local childfind but doesn't qualify for anything b/c is on par academically. it really is a case that we need to see how things progress in the class environment to see how he is doing and what he would need. they say they know pandas b/c there is another child there with the diagnosis. however, from my conversations, the VPrinc doesn't really know pandas. guidance counselor has been on vaca, she may know more. vice-princ was talking 'consequences' when we talked about behvavior. obviously, consequences are often necessary for 7 yr old boys, and ds is not an exception but, the issues i'm concerned about are not ones to be dealt with or will even have success with consequences. so, any advice on the fine line of having the school prepared without dredging up all the old examples? i have the conductor letter from pandas network,(thanks vickie!) which very much describes ds. i have the OT links (thanks trudy and jan!). we are working with a private tutor who may be able to provide help into insights on ds's 'different' thinking but not into demeanor, etc in a classroom environment. thanks for sharing any thoughts, good tales or bad tales!

thanks. i had trouble finding it and thought it was replaced by the two new ones. ahh...vickie. . . the pandas answer woman! what would i do without you??!! not a role any of us get by choice but i do so respect how well you fill it!!

sorry to hear christian mom! haven't had a chance to read the responses but wanted to jot a message -- who/what type of hoempathic practicioner are you seeing? have you discussed with them? i admit i'm not so knowlegable about differences of abx. we are seeing an integrtive MD who treats with homeopathy. he mainly uses sequential homeopathy using the remedies in a similar mehtod to abx to clear infections. when warrented he uses a consitutional rememdy, which for ds7, i bleieve is same as your ds -- hyoscyamus - ?.ds7 is mre complicated case and has taken longer but is currently doing quite well. ds9 has seen very good results in relatively short time - 7 mths, total now - perhaps an adjustment of homeopathy could help - ?

as usual, i'm a day late and a dollar short. . . i went to look for the conductor example letter to schools that had been on pandas network and they've changed the info. very good letters there now, but i'm looking for that one. does anyone have a copy they can send me? thanks.

not suggesting this is your issue -- just sharing ours. ds9, second pandas child, was a generally healthy kid. at age 3.5, he had trouble with ear infection that wouldn't go away. had ear tubes, adenoids out at age 4. had to take one tube out about 2 years later -- about age 6. (wow -- from memory, could be really off on timing). anyway, at the time of the operation to take out, he had been having a cough for a number of weeks. i took him in when we were thinking about that operation b/c wanted to make sure nothing was up before it. cough seemed to be worse with exercise -- but still not really troublesome, just noticeable. dr found nothing -- suggested exercise induced asthma and suggested using inhaler, if that cleared it up, that made diagnosis. i thought this was stupid and didn't want to use inhaler and use that as diagnostic. month or so later, had pre-op physical, still cough. dr suggested clariton. seemed to help. had operation, all okay. cough went away. (not due to operation, just went away) fast forward, around 2.5 years. ds has pandas symptoms - separation anxiety, inapporpriate reactions, bad thoughts at night. went to our integrative MD who does a kind of sort of ART testing. sees strep, all tic borne illnesses. begin homeopathic treatment. ds has extreme shortness of breath and poor endurance with exercise. traditional med says exercise induced asthma. i think pretty classic babesia symptoms. i don't know if just happened at this time or treatment pushed a herx-like reaction. ds said he'd had trouble 6 mths earlier at baseball camp with keeping up with other kids. after inital month or so of extreme trouble, ds still had trouble keeping up with peers with endurance. now, 6 mths into treatment, is back on track, seemingly in line with peers. was that cough years back somehow related to other issues? no way to know for sure. but it does make me wonder if it could have been. is the cough you're speaking of at all related to exertion? have you checked out babesia symtpoms as they relate to breathing issues?

well put JAG! i have had a couple of docs kind of throw the term asperger, even though ds wouldn't technically qualify. i usually say he has "asperger-like' behaviors that i beleive are due to pandas - it seems to explain it well. i have always seen the concept of pandas being on the spectrum as a positive for autism that any similars may point to medical explanations rather than a negative that pandas is being 'thrown in' with autism.

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if you are seeing a homeopath, i assume you discussed or know the theory of homeopathy, so i'm not trying to be condescending but just want to remind. . . my very layman's speak.. . . the theory of homeopathy is to use a substance to engage a natural body reaction of clearing the troublesome agent or to help the body balance itself. a bit of a contrast to other meds that are to tamp down a reaction. so the traumeel may work in a different way than ibuprofen. i don't know how, but ibuprofen reduces inflammation. traumeel may reach the same end but by different means. i don't think i'd mix the traumeel and ibuprofen b/c you may be kind of canceling the action of each -- i'd definitely consult homeopath if you are considering trying both at the same time. also, it is very common in naturopathic med to experience a 'healing crisis' where things get worse before better, primarily b/c you are engaging the immune system to work on it's own. so you may be beginning to reach a desired end, but experience troublesome effects along the way. what we see as 'symptoms' are really the actions of the immune system trying to rid the infection and/or right the body (i'm stating that more in terms of 'average' infections, not so much the issues we deal with with pandas/pitand.) the first time i took homeopathy for a cold years ago, i had an unbelievable onslaught of symptoms -- had to leave a party early and go to bed -- roaring head, intense tired, clogged ears. i slept hard and woke up the next day with no cold symptoms at all. not to worry you more -- but there is also the issue of engaging the immune system that is functioning in an inapporpriate manner. we have used homeopathy with good results. i have confidence in our dr that he is skilled in the use with autoimmune conditions. did you discuss that with the homeopath? i haven't really heard of adverse effects, but with homeopathy -- you are attempting to engage an immune response to then get rid of symptoms, not just get rid of symptoms. we see an integrative MD who uses homeopathy. ds9 just had appt yesterday. he's been on an antiviral for 5 weeks. have seen improvement but last 1.5-2 weeks, trouble with sleep that had cleared long ago showed back up. dr believes is related to his body clearing this infection and should be gone soon. anxiety in your dd could be related to the clearing of the ear infection -- ? we used ibuprofen for ds on a temporary basis -- i think maybe only 2 doses a time at the max. i had wondered about traumeel but didn't try it. pls keep posted with your results.

tami -- i am sorry to hear how things are for you right now. i know what you mean and have been there -- like ds7 eating like a dog from a plate last summer at his cousin's birthday party and dh and i only happy he was ingesting food. as my sil (mother of the birthday boy) looked on - luckily, she's actually not judgemental but still -- all i can do is shrug and say 'you know he's been having trouble lately -- we're not actually condoning these poor manners.' or ds9 this past easter, threw his lego minifigure that my mom gave him, cried, stomped and yelled carrying on b/c it wasn't the one he'd hoped for. i remember carrying ds7 out of a rec center in full blown tantrum, with many onlookers star struck as i had to kick open the latch mid way up the door to get out of there, with screeching, clawing child much too old for that type of tantrum. and when they were younger i was so proud of how on the ball i was with manners and behavior. where is the silver lining? i don't know -- perhaps it's only that i am no longer judgemental when i see a parent struggling -- i just so feel for the plight. so i know it's troubling when the majority you're surrounded with don't seem to understand you're actually doing an amazing job as a parent but it just so doesn't seem like it on the surface -- whether tthey actualy do or not but you feel that's the scene to the outside world -- but all of us here get it and understand -- perhaps we should all go live on an island together -- we can take turns -- kid watching vs. margherita drinking. i hate to throw this in for you -- but. . . i really question the role of viruses for some kids. we see an integrative MD who uses a form of ART. ds7 tested for lyme but that has never seemed to be his major issue. he had many infections, most troubling being strep and a virus. ds9 tested for most TBI and strep. his symptoms were more separation anxiety and nighttime anxieties. as those cleared, i unfortunately gave him a probiotic that caused trouble. recently, it seems his more inappropriate overreactions and strikeouts may be related to HHV-6. i really do hate to suggest more testing and another path to follow. . . but, hav you discussed with your dr some of the viruses that can commonly be seen with lyme or can be problematic neurologically?

interesting. my mom recently had surgery where she banked her own blood. unfortunately, she needed more and had 2 pints donated blood. anyway, i test for babesia through a form of ART -- and had quite classic symptoms in the past, although not extreme to have warranted diagnosis otherwise. i told her those who have had babesia are barred for life from donating. she asked the guy at the blood bank at the major hospital she had surgery at. he kind of scoffed, "who has babesia in their blood and how do they know?". he totally scoffed it off and said he wouldn't take that as barring me. yikes!

wicked -- so sorry -- i remember that time being difficult. at the time, we also believed my ds to be allergic to peniciilin. later, when i actually looked it up, he had had rash reactions to omnicef and amoxicillin. unfortunately, there is confusion btwn the dr's notes and pharmacy notes -- dr says augmentin was okay, pharmacy says amox -- 6 mths later amoxi is a problem. the only thing that is really clear is he was reacting to more than one abx. i know many say they're the same things but i think there must be slight differences. just now as i look it up -- he was actual on zithromax with no reaction and then the azith was 2.5 years later. perhaps there's something different in the generic vs. real? or additives? i don't really know much about abx and what is good for what. but perhaps, you could discuss w/dr or phamacist. at the time, our pharmacist was surprised to hear his reaction and didn't think it was anything in the abx to cause the trouble. i know we are in the minority, but i believe i've seen others on this forum that have also been helped with keflex. i think i remember at that time, he seemed to be happier if he was engaged in something repetitive, either by himself or with one other person-- like coloring patterns or matching color patterns (the wood color discs to a picture) -- he was 4.5 at the time.

wicked -- i read your other post where your ds seemed to be helped with abx the first time -- is that corrrect? is he on a different abx this time? we did expereince something similar with the first abx my son was on. he had sudden onset of behavioral symptoms only. he had high titers and a positive culture. in trying to discover what was wrong, we had gone to a naturopath and had seen some improvement with treatments for his gut. then we discovered the strep and he was put on a prefunctory 5-day course of aztih by our useless ped. it was terrible. behaviors that had improved returned with a vengenane. extreme whining, easy upset, separation anxiety. i was so happy when that abx ended. he did improve off the abx -- with symptoms seemingly brought on by abx, but not generally. we switched peds and he was put on 30 days of keflex. he had 100% remission in about 3 days. unfortunately, he relasped after about 30 days off the abx and we've since been on our journey for health. what do i think about this? i don't know what to make of it. at first, i thought it was an adverse reaction to the azith -- although he had been on it previously in his life. i thought some abx are better and some are worse for different kids. along our path, we have found lyme. it is common for people with lyme to have an adverse reaction to azith -- a herx -- a worsening before bettering. was it this in his case? it does make sense and add up, but i really think there's no way to know for sure. would he have improved if we left him on the azith? i knew so little back then and it would have been a long haul in dealing with that behavior even if i thought it was beneficial! why did he have such good results with keflex and not azith? i don't know too much about abx -- perhaps the keflex targeted the strep which was causing the presenting problems without engaging lyme, which has actually for him seemed to be more of a 'dormant' infection as far as symptoms - ? so i don't know that i can really help you other than to suggest that if this is a different abx than what you had success with before, perhaps you could switch back - ? i would also say that in retrospect, i wouldn't have taken him off abx after 30 days without a good plan of action. i know a good plan is hard to get in the beginning -- even further along -- but if you could investigate what dr you will see and create a plan while staying on an abx, i'd vote for that rather than going off and seeing what happens. good luck.

thanks. and sorry . . . i'm just trying to make sure i have it straight -- ds9 has appt tomorrow and i wanted to discuss this. CORE is the supplemental product, right? so, you tested with that and his body said he needed it? thanks again. i know -- in an ideal world, you do one thing at a time to make sure you could draw correct correlations. in the real world, you do what may help!

julia -- glad to hear you're on a good track! how did you discover mold to be the biggest problem? are you saying you have been treating mold for 8 mths and that is still the most troublesome now or were you treating other things and mold seems to now be rearing? yes, i'm curious about how many pathogens actually are in our body but may not be troublesome until an overload or some event that triggers it to become unbalanced. thanks.

wendy -- how did you test for this via ART? was there a particular vial or did you test deficient in all the individual minerals and vitamins? thanks.

dave - of course, all kids and situations are different so i cannot really advise you. what i can do, is tell you our story and a bit of 'if i knew then what i know now' my ds7, 4.5 at onset, had sudden onset with pretty much totally behavioral symptoms. only a savvy behavioral therapsit suggested pandas -- all others had various theories. he had high titers and a positive culture. we first wasted time with a useless ped and 5 days of azith, which was disastrous. we switched peds and did 30 days of keflex. ds had 100% remission in about 3 days. this was 2 years ago and i didn't know about this forum, pandas organizations, pandas drs, chronic infections and our best suggestion was the 'experts' at Johns Hopkins. so, of course, we stopped the abx after the 30 days. in about another 30 days, ds relapsed. he again went on keflex. he did see some improvement but not nearly like before. we then began our winding journey for health. whenever tested, ds's titers have been falling. he has never again had a positive culture. symptoms have been up and down - never 100%. we currently see an integrative MD, ds has been treated for multiple infections and is doing quite well. if i could go back, i would not stop the abx without a clear plan -- actually, without a plan A, plan B and plan C. now that you've seen some positive results, can you continue abx while you consider options and make contigency plans?

awesome comment from the Yale dr -- "it's the tick that you don't see rather than the tick that you do see that generally causes these diseases"

okay -- so we're moving forward with tutor on some sort of vague, nebulous plan. not vague b/c of tutor -- b/c ds was a dream in the eval -- fully cooperated, didn't ask 'what' or need repeating once, a little distractable but easily pulled back, hardly displayed any shyness or anxiety, no real signs of deficits, no more phased than the rest of us with volunteer fire horn going off, answered questions with a wrong answer (which he never does - usually gets very quiet if isn't 100% sure he's right). of course, everyone knows this one-on-one behavior is different from a classroom full of other kids and social settings with kids. i'm comfortable with tutor that he is respectful of suggesting programs etc with a big price tag b/c he is unsure if they will provide what we need so he is aware to be cautious with our $. also, i think he's respectful that he's learning about pandas and attempting to see where he may be helpful. he is certified in a number of different programs and special ed so we are going to design some flexible program. i am also using this as a time for this tutor to get to know ds to become a member of our team for when ds is in school next year to be someone who can help work with teachers and others as someone who speaks their language. so -- for those that have used auditory programs, can you tell me what specific behaviors you think were helped by the auditory programs? thanks!

are the cytokines transported in the blood? i had read a long time ago that it wasn't so much the composition of the blood brain barrier that got disrupted itself, but the content of the blood that would cause the disruption.

ds7 is doing quite well currently. with onset, i said he did not have any tics or movements. i saw eye blinking once for about 2 seconds. through the past 2.5 years and my education in pandasology, i have thought that he does actually have some movement issues. they are not jerky movements and are not so much involuntary as unconscious. he never has any muscle pain, etc from it. they do not seem to be tied to any ritual or obsession. per a video on tics vs. compulsions, it's more movements of an 'autistic' realm to comfort or make things 'right', like a stim (not so familiar with the intricacies of that word, thiknk i'm using it correctly). it's hasn't been anything that interfers with his life or ours -- until now. it does not inhibit him from doing anything. to someone unfamiliar, you'd just think it was something he was doing in the realm of being a young boy -- if noticed at all. since spring, he's been doing a pitching motion. i think it's a combo tic- young boy thing. it likley began with baseball season - he's in machine pitch but brother was first year in kid pitch and there was much talk, focus on pitching -- and has turned into something of a disorder nature. it's troublesome now b/c he does it often, close to other people. i think there are some triggers such as being in crowded places, where he does it close to random people. a few weeks ago, he was on a new anti-viral, was having a herx-like reaction and it was very troublesome. he has calmed from that herx, however, this movement is still here. i guess maybe there is a flip side -- the other night we were at a professional game and there was a pitching machine and he could actually pitch beautifully with good accuracy. with other tics -- mostly mouth noises -- i haven't given much attention b/c i have thought of this as just an indicator of his health. that's what i had been thinking of with this also. now, i am second-guessing and wondering if i need to be thinking of this as something else. it's not anything i would seek medication for. i am still confident in our treatment plan, so would not use this to make extreme changes. but, i am wondering if i should be giving this more weight than i am. any thoughts or suggestions? thanks.